Wednesday, June 10, 2009

Why would anyone not register?

Free Marrow Donor Registry through June 22

When my husband, John, was diagnosed with Chronic Lymphocytic Leukemia, we were advised that a bone marrow/stem cell transplant would probably be in his future. This is not something we would consider unless it was our only option, of course. Plenty of patients don't make it through the transplant and others have debilitating graft vs. host disease even if they do survive.

We have already used single agent Rituxan for John's nodes. It was very effective on his blood, but very ineffective on his nodes. So that is not even on the table for the future. The next treatment will be chemotherapy (probably FCR or FR). Hopefully, that will provide a long remission and we won't have to think about CLL for several years. However, when the first remission ends, we will probably have to at least think about transplant since chemo loses its effectiveness with every successive treatment and the malignant cells have to be destroyed in order to transplant healthy marrow that will, hopefully, "take over" the regeneration of healthy cells.

According to my understanding, you don't want to go this route prematurely but neither do you want to wait too long. Younger patients are better candidates and overall physical condition is an important component in transplant success.

John is not facing the weighty decision of whether or not to undergo a transplant any time soon. He hasn't even had his first round of chemotherapy. However, knowing that he might be dependent upon someone caring enough to donate bone marrow to him in the future highly motivated me to register as a donor for someone else. His diagnosis made it impossible for me not to think about the reality that every leukemia patient is someone's loved one.

What if my John's only hope was a transplant and there was no one willing to donate? I immediately sent off for the kit, swabbed my mouth and sent in my $52 registration fee. It did seem odd to me that I had to pay a fee to offer my marrow, but I didn't care. I so hoped I would be a match for someone; perhaps a child.

I have never gotten that phone call, but I hope someday I will. I can't imagine anything more meaningful than having the opportunity to save another person's life. I didn't hesitate to pay the fee, but for the next couple of weeks, you can register without paying this fee. And when I became aware of that, I wanted to post it on my blog.

A couple of weeks ago, I rented the movie "Seven Pounds." At the end of the movie, I sobbed. The reason I did was that my husband's 18 year old daughter, Brittany, died in August of 2003 of a severe asthma attack that went into cardiac arrest. She had designated herself as an organ donor on her driver's license and verbalized it to her dad. Many people were recipients of her gift of life, sight, etc. I was overcome by emotion at the end of this movie just thinking about Brittany and the lives she touched through her own death.

I am also very proud of John for having the courage to honor her request without hesitation; even though this meant a heart-wrenching decision in his darkest hour. Somewhere, we have a letter sharing vague information about each of her recipients. Among her many gifts, she provided a healthy heart for a 38 year old father. I seldom think of her loss without thinking about the children who have their daddy with them today because Brittany and her daddy were so generous.

I loved the movie. However, I did have one axe to grind with it. So I will grind it here on my blog. The movie perpetuated a myth about marrow donation. During the movie, Will Smith donated bone marrow to a young boy with leukemia. The scene portrayed this as a very painful procedure and the doctor told him how brave he was. This perpetuated a harmful myth about marrow donation that prevents many people from registering as a donor.

I made up my mind that I wanted to be a donor no matter how painful it might be. John's diagnosis gave me that courage and motivation. (Nobody hates pain more than I do.) I read extensively about what I was signing up for and I learned that it is not true that marrow donation is extremely painful. You are anesthetized for removal of your marrow. Yes, you may have soreness and discomfort for several days afterward because it's a surgical procedure. But that's it.

You may be healthy as a horse today. You may think cancer will never happen to you. But your life can change in a moment. You or a loved one could receive a life-changing diagnosis tomorrow, next week or next year.

What would you be willing to do to save THEM?

Well, every leukemia patient is someone's husband, wife, son, daughter, father, mother, sibling, friend. Someone needs them to be here. Someone would give anything to keep them here. Someone is needing a stranger to be unselfish and giving. I know that I would give my bone marrow or any organ in my body to keep my John here with me. Why would I fail to give something my body regenerates so that someone else could live, and someone could keep their loved one with them?

Won't you please consider being a registered bone marrow donor? You may one day look at this gift from a completely new perspective, just as I have.

See this link for details:
http://www.marrow.org/
On the main page, the link for details is down on the left hand side.

6 comments:

John Wagner said...

Ahh, you have written the post I have been trying to write in my mind for a couple of days now (my normal routine). But you did it so much more eloquently than I could or would have. Thank you for that. I may link to this post tomorrow, if that is OK.

I was also very touched by the account of Brittany. A true example of a wonderful gift and true good that came out of the most tragic circumstances.

Celeste Maia said...

Shari, I am happy and honored to have my blog linked to yours. How wonderful! I want to now link your blog and a few others I read daily, to my blog, but have not figured how to do it yet. I am just starting and I am all thumbs, pressing all the wrong keys and being rejected non-stop by this implacable machine. Joseph Campbell said once, referring to his computer – and we are talking about late 80s – that he compared it to a God from an old testament, “all rules and no mercy…”
Your story of Brittany is at the same time beautiful and terribly sad. I was deeply touched by it. And I agree with you about donating organs and registering to donate bone marrow. If we can save one life, what can be more fulfilling?
Best from sunny Madrid, Celeste

Celeste Maia said...
This comment has been removed by a blog administrator.
Shari said...

John, It would be an honor to have you post a link to my post. I really felt inspired. There have been so many posts I have wanted to write these last two years and couldn't. I'm thankful for the freedom now to include some of my thoughts regarding CLL.

There is a chapter in my book about Brittany. I only got to be in her life for two and a half months, but I loved her very much.

Celeste, what you do is go to your dashboard (where you make changes to how your blog looks), click on layout and "add a gadget." Then look for an option that lets you add blogs you read. You can give it whatever title you want to. You add each blog one at a time and then it will let you choose how you want to display it; whether just the title or the first few words of the latest post, etc. After you have added however many blogs you want, remember to click on save. Then view your blog to make sure it's there. I hope that helps.

I noticed that in my comment I typed paints instead of paintings. You are such a gifted artist! One day, I may just have to have a piece of your art work! How I wish I could create art like you do! Wow!

Shari said...

Celeste, Blogger posted your comment twice instead of once. I just deleted one of them so there wasn't a duplicate (in case you notice and wonder about it). I have appreciated your comments and look forward to knowing you better.

Rebecca said...

There is a drive in Murfreesboro on June 19th (Friday) from 2pm to 7pm. Check out this site for more details: http://www.marrow.org/JOIN/Join_in_Person/drive_details.pl?drive_key=070-4-05935